How It Feels to Budget Your Energy

In my life with lupus, my brain is keeping a constant tally of energy and how to "budget" my energy throughout the day.

When the miniseries Maid began streaming on Netflix, I was excited to watch it. A fellow writer who I had a connection to wrote the book that the series was based on. In between fleeing an abusive relationship, caring for her young daughter, and earning $9 an hour cleaning other people’s homes as a maid, Stephanie Land managed to write and publish what would become a best-selling memoir.

Being a writer means toiling away at stories for years, wondering if any of your work will ever reach an audience. Stephanie Land represents a common dream — that not just one person, but thousands of people will relate to or even fall in love with your words. I couldn’t wait to watch the series as well as read the book.

As I sat on my couch with my dog in my lap watching Netflix, one scene in particular stuck out to me.

Limited daily energy

Stephanie’s character loads groceries onto a conveyor belt. As the cashier scans each item, a tally of how much money Stephanie has left appears over her head on the right side of the screen. The total diminishes with every item the cashier scans, leaving Stephanie and her young daughter with 5 cents to get through the rest of the evening.

I can relate to this scene, but instead of money, my constant tallying is of energy.

Living in the red of fatigue

My most persistent lupus symptom is chronic fatigue. In the early years of my illness, chronic fatigue meant I was completely exhausted all day everyday. If life with chronic fatigue is like being perpetually broke, then I spent my first four years of chronic illness constantly in the red.

I woke up with no energy. Daily tasks like making instant oatmeal for breakfast or walking to my car depleted me even more. I’d frequently have to choose between taking a shower and cooking dinner because I didn’t have the energy to do both. By the end of the day, I was so exhausted I often started hallucinating.

Shortening my days

By my fourth year living with lupus, I had a better idea of how to manage my fatigue. Because my body will never have enough energy for me to be functional or even awake for an entire day, I shorten my days by sleeping 10 hours a night.

Sleeping 10 hours a night doesn’t mean I wake up feeling refreshed. I’m at my most tired in the morning. Fortunately, I usually feel better as the day progresses.

Budgeting my energy

In the same way that Stephanie in Maid budgets every penny, I have to watch my every energy expenditure. If I go to the mall for 2 hours on a Saturday, I have to go home and rest afterwards. I also have to make sure the following day does not involve a lot of physical activity.

Certain activities, like cleaning my house or cooking dinner, cost more energy than others. If I want to spend a day out with friends, I have to budget for it by not exerting too much energy the day before and also the day after. Being around people who add stress to my life also depletes my energy.

Since becoming sick with lupus, I’ve had to stop spending time with people who don’t understand or who won’t accept that my energy is limited.

My silver lining

In my life with lupus, I’m  budgeting my energy. I check in on how I’m feeling every hour, then evaluating whether I can walk the dog or clean the kitchen. Sometimes the act of monitoring my energy also depletes my energy.

Thirteen years after I first got sick, I’m much better at budgeting my energy than I used to be. I’m able to maintain a job, spend time with friends, care for my dog, and even date. Living with chronic fatigue will never be easy, but it comes with a small silver lining. I have learned to fill my life with activities and people who bring me joy. I’ve decided not to spend my limited energy on anything else.